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Personal Stories

Caroline's Story

8th of October was the day our world came crashing down. We went for our routine 20 week scan. I was so pleased to be told that I was having a little boy. I knew Max (aged 6) was desperate for a brother, and I knew Jordan (then aged 7 ) would love a brother or sister.(Something was wrong! I can remember thinking 'oh no, he's got a hole in his heart'- If only that was all it was. The sonographer called for her collegue, then they called for a consultant. Now I knew we were in trouble.(We were told quite bluntly, that our son had a diaphragmatic hernia. This meant his diaphragm hadn't formed properly earlier in the pregnancy which meant that his bowels and his stomach were in his chest. This had caused our baby's heart to be misplaced on the right and leaves less room for normal lung development. We were told then that his chances were about 50:50.

I felt I needed to give my baby a nice strong name. We had been considering Sam, Oscar and Fraser. Jordan and Max liked Sam the most. I looked the meanings up in the baby name book. Samuel means: god has heard, and Samson means: against all odds (which Sam would be- so we hoped). So we decided on Sam; a combination of both names.

We were referred to the John Radcliffe hospital the next day. We had another scan and an amniocentesis, this was to rule out any other abnormalities which would have meant our little boy stood no chance. We met Dr Lawrence Impey for the first time. We were to see this man a great deal more during the pregnancy. I am grateful to him for his honesty throughout.(We were told that Sam's condition was at the worst end of the scale and therefore his chances were less than 50%, more like 30%.

Dr Impey told us about an experimental treatment that was being carried out by expert and wonderful man,Professor Nicolaides. it was suggested that because of the severity of Sam's condition he would be a good candidate. We were referred to Kings College hospital in London, and met with the lovely Dr Jacque Jani. Again, I'm grateful to this man for his honesty and kindness throughout. An expert in the condition, Dr Jani told us that Sam s hernia was very severe and he also had his liver in his chest. He told us that without the operation, Sam s chances of survival were about 5%. Sam s lung to head ratio at this time was measured at 0.4 (it should be 2.5-3.5).

We agreed to have the FETO treatment, which involved putting Sam to sleep, then through my tummy putting a camera in along a tube, then placing a balloon in Sam s trachea (with the aim to increase lung growth). This was the most painful thing I have ever been through, but I thought it was going to help my little Sam. All seemed to have gone well; weekly scans from then on showed Sam s lung to head ratio gradually rise to 0.9 then even 1.1. I really thought things were looking up.

On the 10th of December- my daughters 8th birthday, I had a show. I knew this was bad news being only 29 weeks pregnant. I put on a brave face till the celebrations were over. Then I called the hospital. They said not to worry.

On the 11th of December, I went to watch my sons nativity play- he was reading the part of Joseph. Then I went to see my midwife. She sent me straight to Oxford hospital.I was monitored, and during my time there, starting having contractions. I was given drugs to stop the labour, and Sam was given steroids to mature his lungs. After 3 days, all had pretty much settled down (though not completely stopped) and I was discharged from hospital. scare over - or so I thought.

On the 19th of December my waters broke at 10.30 pm. I rang oxford, but there were no special care beds. I had to go to the local hospital -GWH, and was then transferred by ambulance to Kings in London.

On the 20th, I saw Dr Jani and Professor Nicolaides who scanned me and decided it was safe for me to return home to spend Christmas with my family. The loss of amniotic fluid was a result of the FETO operation and baby Sam s surrounding fluids were still ok.

On the 22nd of December, I woke up in the morning; this time my waters really had gone. I was once again transferred by ambulance to kings. This time I knew I was staying. I went into labour.

Baby Sam still had his balloon in from the FETO operation. This should have been removed before he was born. Dr Jani was going to puncture the balloon on the 23rd of December, but during the hour before the operation, Sam s heartbeat slowed down for 7 minutes. I nearly had a c-section. Then Sam perked up again, but the professor decided it was too risky to do the procedure and the balloon would have to be removed after Sam was born.

It broke my heart that i could not be with Jordan and Max on Christmas Eve, and that I needed Daddy there too, because baby Sam was coming. Their Nanny, Bo-bo nanny and Uncle Roy looked after them.

My baby boy came into the world at 7.38 pm on Christmas Eve, weighing 3lb, 1oz. I saw his arm shoot up in the air. This is the only time I saw my baby boy move. Dr Jani punctured Sam s balloon, but it was over 4minutes before they were able to get any oxygen into Sam.

Sam was whisked away.

Later that evening we were told that it was unlikely Sam would make it. I didn't believe he would die. We went and sat with him. He was all wired up and we couldn't even see him properly, but he looked strong to me. We stayed with him till the early hours of the morning.

We woke up Christmas morning (we stayed in a room in the hospital).I thought, no news is good news . Sam had made it through the night. We went to see him. Things were looking worse. He was going to die. He was going to die on Christmas day. I called home and arranged for my family to come to see Sam. I urged Sam to hold on till his brother and sister reached him. He couldn't wait though. He died in my arms between 11:40-11:45. I told him it was ok to stop fighting, and that he could go. Now Ive changed my mind; It s not ok! My heart is broken.

I had to break Jordan and Max s hearts too. When they arrived at the hospital, excited to see their new brother, I had to tell them he had died.

We spent the rest of the day with Sam in a private room. I got him dressed and we all cuddled him. He was and always be the best Christmas present ever!

I never got to see his eyes open. I am so sad. I miss my little boy. I want him back!

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